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Voluntary assisted dying via telehealth is another step down a perilous path

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In legislatures around Australia at present euthanasia is a staple item. Apart from the moves to legalise it in Queensland and South Australia, Justice Party MP Stuart Grimley has proposed amendments to the Victorian law. It would give regional Victorians the option to use the euthanasia services to end their lives through telehealth.

Main image: Women holding hands hospital bed (Getty Images)

Critics of the amendment have claimed that it is unreasonable to make euthanasia more widely available when palliative care services are still critically lacking in regional Victoria. They cite the recommendation of the Royal Commission into Aged Care Quality and Safety that dementia care and palliative care ought to be the core business of aged care. It is vital that euthanasia legislation ought to balance the liberty of the invulnerable against the safeguarding of the vulnerable, especially the elderly and people with disabilities.

In considering the amendment it will be helpful to consider two common arguments in support of euthanasia. First, that it would enhance individual autonomy or self-determination. This argument, which featured prominently in the submissions to the 2016 Victorian Parliament Inquiry into End of Life Care is often played as the trump card in the euthanasia debate. The second argument, central to the advocacy of Drs Philip Nitschke and Rodney Syme, is that euthanasia provides relief for people with existential suffering that palliative care cannot adequately offer.

The principle of respect for individual autonomy was introduced into health ethics with the Nuremberg code (1947) in response to the need to safeguard the vulnerable from abuse at the hands of health professionals. The Nuremberg code ushered in a new era, in which the vulnerability caused by the power imbalance that exists between the physician and the patient has become the major concern in health ethics. The Nuremberg code has restricted the power of physicians by making it compulsory for them to obtain informed consent from the participant before making any medical intervention, be it in health practice or in research involving human subjects.

The principle of respect for autonomy in health ethics is formulated to address this power imbalance. Its aim is to safeguard the vulnerable from abuse by empowering the vulnerable and simultaneously restricting the power of the physician.

Seventy years after Nuremberg, in Australia safeguarding the vulnerable has become mandatory in virtually every sphere of social interaction: safeguarding children against abuse, safeguarding women against abuse and harassment in the workplace and in the home, safeguarding LGBTQI children against discrimination, to name a few examples. Now, paradoxically, respect for autonomy is being used to argue for euthanasia legislation.

 

'...existential suffering is precisely one of the ailments that palliative care is meant to address.'

 

This is paradoxical because the effect of euthanasia legislation is not to safeguard the vulnerable. On the contrary, it gives physicians unprecedented powers over their patients. The physician now has the power to assess the competency of the patient to make decisions for themselves, to predict how long they have to live, and to provide the lethal drugs to end the patient’s life if they are judged to have the mental capacities to make such choice. This is contrary to the spirit of the Nuremberg code. It exacerbates the power imbalance in the physician-patient relationship by endowing the physician with new powers over patients, making them even more vulnerable to abuse.

Mr Grimley’s bill to make assisted death available on telehealth goes further in tipping the scale in favour of doctors, by empowering doctors to end the patient’s life in regions where they have no access to palliative care. With assisted death available on telehealth, the elderly and people with disability, the most vulnerable people in the community, will be even more prone to exploitation or neglect.

Such euthanasia advocates as Dr Rodney Syme often insist that assisted death should be available because despite excellent palliative care, people with existential suffering cannot be helped. In this case, existential suffering is thought to be a form of intractable misery that lies far beyond the realm of palliative care. The only solution to it is to help its victims to end their life.

In the medical world existential suffering is a term used to describe a range of experience. In the palliative care setting, existential suffering can refer to ‘lack of meaning or purpose, loss of connectedness to others, thoughts about the dying process, struggles around the state of being, difficulty in finding a sense of self, loss of hope, loss of autonomy, and loss of temporality’. These afflictions are not limited to people at the end of life. They can be experienced by many people, particularly people with mental illness, or those going through a crisis or severe trauma.

Discussion of existential suffering leads naturally to reflection on the nature of suffering. Medically, pain and suffering are two distinct concepts. The International Association for the Study of Pain (IASP) defines physical pain as ‘an unpleasant sensory and emotional experience associated with, or resembling that associated with, actual or potential tissue damage.’ Mental pain refers to the experience of perceived injury to or diminishment of the self. In contrast, suffering refers to the subjective experience of pain plus the volitional resistance to it. In other words, suffering is the experience of pain plus the revolt against that pain.

In this broad perspective existential suffering refers to revulsion at the prospect of death, or to resistance to ongoing life in the present condition. If that is the case, then existential suffering is not some form of intractable misery that lies beyond the reaches of palliative care that the only solution is to end the life of its victim. In reality, existential suffering is precisely one of the ailments that palliative care is meant to address.

Elisabeth Kübler-Ross in her influential 1969 book, On Death and Dying, described the five stages of grief as one faces imminent death. Though the actual descriptions of these stages have undergone significant revisions, the main tenet remains valid: people refuse to accept death, and this refusal lies at the heart of their suffering. Palliative care is precisely to accompany people in their struggle through the various stages — or various forms of resistance — to the peaceful acceptance of death. Paradoxically, that peaceful acceptance of imminent death is also the end of suffering, including the existential suffering that has been the major concern behind Dr Syme’s advocacy for euthanasia.

Mr Grimley’s bill would take us a further step down a perilous path, where physicians are authorised to prescribe death to patients on demand without seeing them in person. And those who struggle to accept imminent death will be deprived of the palliative care that might make the end of their life a journey and not a defeat.

 

 

Hoa Dinh SJ is a lecturer in moral theology and bioethics at Catholic Theological College.

Main image: Women holding hands hospital bed (Getty Images)

 

Topic tags: Hoa Dinh, euthanasia, VAD, palliative care, Nuremberg code, ethics

 

 

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Existing comments

This amendment's existence comes out of the specific ban on telehealth in the Victorian act and the amendment is unlikely to receive support. That's the political reality as the bill's major sponsors have voiced their opposition. Palliative care's role as providing for some people a way of easing existential suffering is certainly true for some people. It seems to me however that it is up to an individual person to make this choice for themselves. Some people will perhaps see a significance in the pain this seems to often stem from obedience to a moral code they have embraced. And so some may find this a pathway to way to a peaceful acceptance of death. Others may decide that they may choose to end their lives within the terms of this legislation. The exercise of choice and diversity should be celebrated. This is that individual's pathway. Obviously, there must be safeguards from exploitation and impulsive decision making. The idea that there is some appalling "slippery slope": a "perilous pathway" lying out there in that space where individuals make their own decisions is not a lot more than a sad old trope.
Ross Bell | 10 June 2021


"The exercise of choice and diversity should be celebrated. This is the individual's pathway." Here we go again, as we witnessed in abortion law reform: changing the focus of the issue by shifting the language that defines it, in order to obfuscate the reality of direct killing involved in both these moral and social issues - with the assumption of a solipsistic right thrown in for good measure. This, Ross Bell, is the "sad old trope."
John RD | 11 June 2021


So easy, just call 1800 KILL ME for a quote...it seems it's harder to get a gun licence than end a life, from either side of the affair - dying or doctoring. Despite being old and decrepit I use video chats every day but have not yet managed one successful video telehealth consultation yet, each time being IT/software system mismatches at the hospital ...although have had frequent phone call telehealth sessions and been prescribed various drugs all from the convenience of an armchair, but not seen by a physician at all. Anyway, you've just given me the plot for a fantastic murder mystery, perhaps a perfect crime. Murder weapon provided by others with their intent being documented to kill someone. Victim administered sedative prior to a lethal dose so doping is undetectable by coroner. COVID restrictions so everyone is wearing a mask. A national telecommunications network so unreliable a regional blackout is almost guaranteed. A "buggy" federal initiative being used for a hasty state program; each authority more keen to blame the other than take responsibility... if only I could think of semi-plausible, incompetent Ministerial characters... unlike the current gothic excuses of Ministers we have who have no credibility whatsoever.
ray | 12 June 2021


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